Chronic Pain, Creative Writing, eating disorders, Favorites, My Story, psychology

Fighting a health issue without judgement, for the first time

IMG_2141.JPG

They say one of the worst things a blogger can do is to begin all your posts with an explanation of why it’s been so long since your last post.

Normally I’m able to stop myself from doing this, but I’m going to let myself do it this time, since it’s actually relevant to what I want to say.

The reason I haven’t been on here in so long is I had a crazy past few months dealing with the most insane dust and mold allergies.

I had been living in a super old 1700’s farmhouse that had not been well-maintained.  A good friend had been living there for years and needed a roommate, and the rent was super low.  So I moved in with him, following my return from California.

I had never really had significant allergies before, beyond suffering from pollen one or two weeks out of the year.

But this winter, it came out of nowhere.  I thought I was sick at first, and had to take antibiotics for a sinus infection, but even once that was treated, some of my symptoms never went away.

Thankfully, my primary care physician referred me to an allergist (even though I was convinced I wasn’t the kind of person who had allergies) and sure enough, I tested positive for dust and mold allergies.

By then, things had gotten so bad that I could barely sleep– I was so congested it was hard to breathe.  I’d wake up feeling like I couldn’t get enough air.  My sleep schedule got all messed up, and I started relying on things like Benadryl and Nyquil, which of course left me exhausted the next day.  And during the day, dealing with my symptoms felt like a full-time job.

In the midst of all this, I realized I had to find a new place to live– a pretty intense and financially-involved decision to make when you know you’re not in your right mind.

Somehow it worked out.  It took another month, but I finally ended up moving, and am gradually doing better (my allergy doctor said it might take a few weeks).

I’m a little upset at how much time I lost on this problem– really, I wasn’t able to be productive for much of the winter, until things finally came to a head in March.

However, if I look back, I can see that some good came out of this, in a way.

This was really the first time I experienced a health issue and pursued treatment on it without stopping to judge myself, or the way I was handling it.

***

I mentioned in a previous post that, in the past few years, I came to realize that many of the same issues that contributed to my eating disorder were also affecting the way I handled my health issues.

Specifically, in an unconscious way, I was afraid to devote too much time or effort to “fixing” something with my body, because I was afraid it would trigger the same obsession that caused me to starve myself while running 40+ miles a week, until I eventually developed compartment syndrome.

With issues such as my chronic pain, and then my SI joint issues, I only tried to fix the problem to a certain extent.  I’d go see a specialist, I’d go to PT, I’d do my exercises.  But then I wanted to stop, be a normal girl, focus on other things.

I finally identified this pattern 5 years into my SI joint problem.  I realized, you know what, this problem has completely taken over my life anyway.  It doesn’t really make sense to try to “limit” the time I spend trying to fix it, because things are so limited for me right now anyway.

So I gave myself permission to do whatever it took, and started my SI joint blog as a way to keep track of the things I researched.  And it was during my research for this blog that I first came across another patient saying constant chiropractor adjustments made her worse.  That planted the seed in my mind, and I ultimately came to realize that the same was true for me as well.

With my allergy stuff… I got right to it.  I scheduled an allergy test, and when the first office of the sprawling medical practice couldn’t fit me in for over 6 weeks, I called around until I found an opening in 2 weeks.  I made all the lifestyle changes my doctor recommended, and then some.  And then I moved.

Of course, it was a little easier to proceed without judgement from others in the context of allergies.  After all, we don’t suspect people of “making up” allergies for some kind of gain. You can’t get workers comp for it, and there aren’t any super fun drugs.

But even so, I felt that the biggest difference this time around was in my mind.

I had it in my head that I was a “normal” person, experiencing a problem, and I did what it took to get better.  I didn’t waste time on “whys” or “what ifs.”  I didn’t ask if I deserved to get better, or worry about what the doctors might think of me.  I simply had a problem, and I did what it took to find a solution.

When I first started having chronic pain at nineteen, I thought I deserved it…  I’d starved and abused my body, even though I should have known better, and that the pain and the compartment syndrome and maybe even my SI joint problems were the price I had to pay.

Now, at age 32, I never felt that way about my allergies on any level… I just saw them as a crazy fluke of biology, a random stroke of unfortunate genetic luck that was completely not my fault.

So… it’s interesting to feel this way.

IMG_2148.JPG

Does anyone out there know what I mean?

Have you ever come to realize that your own negative beliefs and fears about yourself were affecting the way you pursued treatment?

Don’t let them.  Believe in yourself– believe that you are normal, and that answers are out there.  Because they are.

Central Sensitization, Chronic Pain, Pain Neurophysiology Education, Pain Science, physical therapy, Treatment Approaches

What is pain neurophysiology education?

In a nutshell, pain neurophysiology education is the type of treatment for chronic pain that changed my life and inspired me to become a physical therapist.

I’ve mentioned it in passing on this blog, but I decided it’s high time I give the topic its own post.

***

In my series “How a physical therapist helped me through my lowest point,” you can read the story of how my life had ground to a halt because of chronic pain, until I finally met Tim, a physical therapist who had studied with Neil Pearson.

Tim treated my pain in an entirely different manner than all the physical therapists and doctors I’d seen previously.

He explained to me that after all my body had been through– running 45 miles a week, only to develop compartment syndrome and barely be able to stand, to live like that for two years, and then to undergo surgery– my nervous system had gotten confused.

All the pain doctors hadn’t been able to explain– it wasn’t because I was crazy.

In fact, the reason I was feeling all this pain was because my body was trying to protect me.

My nervous system had decided the world was a dangerous place.  It was tired of me taking chances– it didn’t want to have to deal with another injury.  So it was making everything hurt.  It was making me feel as though I were made of glass.

But I wasn’t made of glass, Tim assured me.  My body was strong; it was capable.  And this attempt on the part of my nervous system to protect me had over-served its purpose.

Tim explained that the surgery I’d had for compartment syndrome had been successful, and despite how much my legs might hurt at times, I wasn’t going to be able to bring it back just by walking down the street.

***

The pain neurophysiology approach worked when nothing else had, because it gave me a real explanation for the pain that actually made sense.

Before that, all the physical therapists I’d seen (and I’d seen a lot) had taken one of two approaches:

A) You have some underlying soft tissue problem or scar tissue or whatnot that we have to fix with a special treatment, or

B) I can’t really find anything wrong with you, so the pain must be in your head and you should probably see a psychologist.

Neither of these approaches ever made a difference for me.  The “special treatments” for the hidden, subtle issues in approach A never fixed anything or reduced my pain (except temporarily, because I felt like I was doing something).  And approach B never fixed anything, because ultimately these problems were not reflective of my overall mental health.

Instead, I learned, my pain was the result of a specific phenomenon that occurs within the nervous system: central sensitization.  Basically, the underlying principle here is that the more practice the nervous system gets at sending signals, the better it will get at sending those signals.  And that is true of pain signals, along with everything else.

***

Tim didn’t really use the words “pain neurophysiology education” while I was seeing him for treatment.  Instead, I first found this phrase while I was looking through Neil Pearson‘s website, as Tim had urged me to do.

From there, I discovered the names of other physical therapists and researchers who had contributed to developing pain neurophysiology education, or PNE as I’ll be referring to it in the future.

Names such as David Butler of the Neuro Orthopedic Institute, and Lorimer Moseley of the research group Body in Mind.

From there I have discovered so many interesting resources, and articles, and interesting people doing work on the subject.

***

For 2017, I’m trying to get back to my roots on this blog.  I started blogging to educate people on the science of chronic pain, and I really enjoy doing that.  So I’m planning to start channeling more energy towards that again.

So I’m going to start fleshing out this section of the blog again.  I’ll be providing a lot more explanations, linking to great resources, and also quoting excerpts from articles that I think explain things really well.

And I’ll be telling my own story, when it comes to my struggle to understand my body, and learning to deal with central sensitization.

***

For now, I want to leave you with two posts I wrote on some of the main concepts I learned through my experience with PNE:

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

These posts tie in a couple of anecdotes from Neil Pearson and Lorimer Moseley that I found particularly helpful.  (Let me say, once again, that I am so, so grateful for their work!).

***

I hope you find this post, and the related articles I linked to, to be helpful!  I’m really excited about the things I plan to write about in the future, and I hope you stay tuned!

Creative Writing, Favorites, Inspiration, Uncategorized

A Returning

IMG_1984

“I have been away.

I have often thought of how to begin this blog again after a long hiatus and then more time would pass and there it stood waiting for me to speak, write, and reach out.

The reason for my silence is the same reason for beginning this blog. Living with chronic illness permeates everything we do. It is the scaffolding of which we build each day. It determines our daily plans, what we take on, and what we leave unfinished. As I dedicated each day to doctor’s appointments, physical therapy, medication changes, and rebuilding my life after a health storm, this unfinished blog provided comfort knowing that it was a place for me to return.

As the months passed, I was forced into long stretches of bed rest, breaking from work, my passions, the world, and my voice. This is the cycle, after all, of the chronically ill. It is a sequence of retreat and victory, of silence and stories, and of mining the telos of one’s spirit.  What incites us to account our narrative to others relegates us to silence in other moments in a life lived with chronic illness.

I have to admit that at first my silence was “put upon” me. I was so engulfed in pain, fatigue, and just getting through one hour after another that I had no desire to communicate about the latest health trial. Yet, resignation turned towards choice, as I again reimagined and redesigned a future. It is a truth we face when dealing with an incurable disease that we must rewrite our future story after it is continually malformed by our bodies.

The poet Carmen Tafolla wrote: “I was the fourth ship. Behind Niña, Pinta, Santa María, Lost at sea while watching a seagull, Following the wind and sunset skies, While the others set their charts.” This post is dedicated to the future, to the reciting of a livable future, and to exploring the why in a life filled with medical chaos.

Illness is an invasion of identity. Since living through surgeries, a nine medication regimen, and too many medical procedures, I have searched for an explanation, a pathway, and a satisfactory answer to why. Why did this happen? Why me? I have done everything from pretending that the illness part of my life is nonexistent to studying the mechanisms and pathologies of the body; nonetheless, illness continues to lead its assault.

To live with a chronic degenerative disease one must constantly engage in meaning-making. Why? It is because illness is unremitting and untrustworthy. A medical crisis can topple all that you have worked towards in a mere blink.

Therefore, we are professionals at reconstruction and rebooting our future.  Often times, it is a future tinted by professional and personal sadness. Professional goals wane under the weight of the body often causing an individual to lose their job or relinquish ambitions. Illness demands a personal reimagining of what family looks like sometimes forcing an individual to move in with a family member who subsumes a caregiver role or surrendering the dream of having a family and experiencing parenthood.

Illness fractures identity and makes us feel less complete because completion is continuously interrupted.  I believe searching for the “why me” is not out of anger, jealousy, or pity but out of the attempt to take all these futures interrupted and find fulfillment in a life that no longer looks like the life originally intended.

Chronic illness mandates that the individual who lives with it coat themselves in an extra layer of depth because it is a permanent state and the human mind has forever raised questions about immutability.

I spent the last year in renovation.  It’s frightening; isn’t it?  There’s a trauma processing that must be completed in order to move forward in life.

When I was first diagnosed with endometriosis and a chronic pain condition due to a spinal injury, I had no idea nor was it explained to me that I was going to have to go through a continual cycle of insecurity. I was oblivious to the fact that I was going to have to live my life in a temperamental space.

It is of my opinion that chronic illness patients do not fit easily into the usual experience of loss because our loss is not consistent.  The future is unpredictable and so our stories are discontinued and resumed and this process repeats infinitely.

Thus we are forced to mourn each time and rebuild our futures anew holding our breath again that the house will not collapse with us inside. Our narratives remain disjointed and so without any desire for it we gain a level of complexity that is difficult to communicate and share with others even those we love the most.

I don’t know if there is a way to rid ourselves of this anarchy that illness brings. What I am still learning is that inside this chaos we must pledge to coming out of the other side of it. We must promise to find our voice again.

I have been away but now I am returning.  Each one of us can say that.

Although it may appear like a small triumph, I am proud of my return and I am proud of yours too.”

***

The above post was written by my friend C. over at her blog Para Las Fridas.  I have re-posted it here with her permission because it is quite honestly one of the most amazing accounts of life with chronic illness I have ever read.  From the moment I first read it, I was struck by the way C. managed to put into words aspects of my own experience that I had been afraid to face, much less articulate to myself.

Like the feeling of having lost time, of living according to a completely different calendar than everyone else.  Of knowing I’ve disappeared from the world, for months and years at a time, while life has marched on unrelentingly for everyone else.

The feeling of resurfacing, of returning, without knowing if it’s an illusion, or for how long I’ll be allowed to stay before disappearing again.

The feeling that I’ve become an expert at remaking my identity: after each disappearance and returning, constructing meaning again as best I can, assembling the pieces that make sense, filling in the gaps in a way I hope no one else notices.

C.’s words give me the courage to come on my blog and tell my own story, when I’m afraid it’s been too long, or no one will be able to relate.

I am not the only one who feels this way; I am not the only one who has disappeared and returned.

***

You can check out the rest of C.’s writing at Para Las Fridas!  It is simply incredible.

I also wrote this post outlining some of posts C.’s site that meant the most to me.

Lastly, you can also see what C.’s up to on Twitter.

Creative Writing, eating disorders, My Story

A Clearing

img_0027

So I’ve been clearing out all the old stuff from my storage unit.  Finding so many reminders of all the plans I once had.

The high-heeled boots I bought senior year of high school, right before the Halloween dance.  My friends and I were all going to go as “sexy cops.”  (I know).

My running “spikes,” as our cross-country team called our specialized lightweight racing shoes.

It’s bittersweet, to look back and remember all of the optimism I had towards my goals– goals I would never reach.  Especially when I can recognize that some of those goals were pretty unhealthy.

Why did I need to wear high-heels?  They were only making things worse, as I was developing compartment syndrome.

Why did I need to run?  I truly loved it… but at the same time, I wasn’t truly listening to my body, and ran it into the ground.

So much pressure, to be thin, to be pretty.

So now I’m clearing out my storage unit, and there are just so many clothes.  So many clothes, in just about every size.

My size 2 clothes– the last clothes I bought before my health issues spun out of control and a medication forced me to gain weight.  At the time I thought it was horrible, but now I can see it was a blessing in a disguise.  It took something overpowering, and dramatic, to truly break me out of that way of thinking.

Chronic pain finally pushed the obsession with being thin out of my head.  There was no room for anything else; there was only survival, from one minute to the next.  I’m not sure if anything else could have done that– not without it taking years.

***

But I’ve held on to my old clothes all this time.  I loved them, because they were my way of telling the world, at 16, that I was an adult.  (An adult that wanted to dress just like Buffy!).

mpddt1b8ktm2cvghyrfd

My outfits, at the time, felt like works of art.  Handbags, sweaters, dresses– everything perfect.  My mom had picked out all of my clothes for me as a kid, and in the cutthroat world of high school girlhood, it took me a while to define my style.

Once I did, my clothes became my way of making a statement.  I discovered that the better I looked, the more power I had in the social world of high school.   If I looked perfect, it was harder for other girls to make fun of me.  My clothes became my armor.

When I gained weight at first (right after high school ended), I held on to all my old things because I thought I’d eventually be a size 2 again.  Then, once I realized I never actually wanted to be a size 2 again, I continued to keep them simply because it felt strange to part with them.

They’d helped me to define myself as an adult.  At one point in time, they’d protected me.

And they’d been waiting for me for so long, like a lost bookend, marking where I could find the life I’d been waiting to come back to when things finally got better.

I wasn’t ready, until now, to let them go.

But I don’t need or want that life anymore.  I no longer feel like I need to wear high heels in order to be a true girl.  I don’t want to put on eyeliner every morning like it’s war paint.

And I don’t need to weigh 115 pounds, or to be able to see the outline of my hip bones perfectly, in order to be attractive.

I just want to be me.

Favorites, Inspiration, mindfulness, My Story

San Francisco, Revisited

29862769902_1d1dbed312_k

It’s so interesting for me to go back to San Francisco.

As you may remember, I spent a few weeks in SF back in June, following a good friend’s wedding in Napa Valley.

I actually just wrapped up another trip out there. I spent most of September in SF, staying with a friend and trying to investigate whether I’d eventually want to move there for work and/or grad school.

***

The city of San Francisco is symbolic for me, for a number of reasons.

Back in 2005, one of my friends from high school (CA) and I had planned to travel to the Bay Area and visit our friend Karen, who was attending Stanford University at the time.

Our trip was actually planned for the same time of year– September.

However, I’d just had my surgery for compartment syndrome that spring, and at the last minute, I freaked out and canceled my plane ticket. After all I’d heard about San Francisco’s hills, I just didn’t think my legs were ready, and I didn’t want to take a chance. So CA flew out by herself, and I stayed behind to mend.

I was 19 at the time, and although I didn’t know it yet, I actually had somewhat of a long road ahead of me. As I’ve mentioned in previous posts, I didn’t travel at all in the first half of my 20’s, and it was only in the second half that I started to ease back into it with local trips, such as camping in the White Mountains of New Hampshire.

As most of you probably know, I developed my problems with central sensitization (CS) around that same time, shortly after my leg surgery. I definitely don’t think the surgery caused the CS, but as something that the body perceives as a “trauma,” it may have been one of the precipitating events.

I’ll talk more about why I developed CS in the future, but for now, what I want you to know is that for the next five years, I didn’t travel at all. The second five years, I got back into it slowly, but only local trips, and not by myself.

So now, at 31, after everything I’ve been through: compartment syndrome surgery, discovering pain neurophysiology education, struggling to heal my sacroiliac joints…. it feels almost like I’m living in a dream world. To be able to travel to San Francisco and walk around to my heart’s content– it’s like I was transported to a parallel universe.

img_4673

Here was the moment when it really hit me, how far I’d come:

I was walking from my friend’s house to the gym, and I ended up walking up some really huge hills. Like, gigantic hills– the kind you think of, when you think San Francisco.

And I was just doing it. I wasn’t sightseeing– I hadn’t set out to “walk the hills.” I was just trying to get from one place to another, like anyone. Like a local.

And it was okay.

I mean, if anything, I got a little bit of a wake-up call about maybe needing to do more cardio. But after all the years I’ve spent only being able to work out in a pool, it was such an amazing feeling to be moving through the world, as fast as I wanted, feeling my heart pumping. I was free.

It was a feeling I’d forgotten– to truly push my cardiovascular system to its limits with each footstep, out in the wind, out in the sunshine. For the past few years, I only got to experience that feeling within the safe, weightless environment of the pool.  While I am so grateful for my pool workouts, my trek on this day brought back a form of muscle memory. With the thud of each footstep, I was awake. I was back.

The thing is, this isn’t really meant to be a post about physical accomplishment. Instead, it’s about my unexpectedly “Returning” to an aspect of life that I was prepared to live without.

I had made peace with not being able to move the way I wanted. Not being able to travel, and more or less being stuck in place, taught me to try to always notice the beautiful little things around me. I’m not saying I succeeded all the time, but it was a skill that I worked at, and I got better at it.

I had to learn to savor the little things– the colors of the leaves in fall, the glitter of sunlight filtering through the trees, the taste of really good coffee– because it was the only way to make up for the things I’d lost.

Over time, it started to come more naturally. Maybe I was just getting into a better place in my life, emotionally. Maybe I was just growing up. Or maybe it was all of these factors.

But the point is, it happened. I learned to live without running, without traveling, without feeling free in a geographical sense, because I realized there were more important ways to feel free.

Now that that kind of freedom has come back to me, it’s like an unexpected bonus. And I view it gratefully.

Save

Save

Save

Creative Writing, Inspiration

Reading List: Vulnerability

24269340074_09e3fe117e_o

This is the question that has consumed me recently: how do people take their most precious and guarded memories, and spin them into stories, unfurling them to the world?

It seems so easy when other people do it– when you read a famous, heart-wrenching novel for class, and analyze its themes. “I could do that,” you say. “Someday maybe I will.”

But it’s so different when you begin to try– shockingly different. In real life, I haven’t begun– I’ve only hinted at my most personal stories. I’ve only begun to write them and tell them in my head.

In the morning I wake up too early, in a panic, short of breath. “What have I done?” I gasp. Then I relax. I haven’t actually written anything yet; haven’t hit publish.

I have so much respect for those who have. I’ve always loved and looked up to writers, but now I do so with a respect that is so much more real now that I’ve begun to consider the task myself.

So here, my readers, are a few things I’ve read recently that have inspired me:

Rian Kerfoot, Truth and Cake:

Mary Gelpi, Fibromy-Awesome: Getting Clean Real talk from a girl with fibromyalgia who talks about how, somedays, bathing is just not on the agenda. I’ve been there.

Bianca Sparacino: “You Are Not for Everyone.”

Beauty Beyond Bones: I love her whole blog, but I’ve recently discovered her early posts, which send chills through me. I so want to tell my story like this. (I was never hospitalized for my eating disorder, but her words resonate on so many levels).

Sade Andria Zabala: I discovered her a few months ago when I was heart-broken, and her words ripped me apart more and then healed me at the same time.

All of these pieces of writing are breathtaking — check them out!

My Story, Sacroiliac Joint

An update on my sacroiliac joint saga

IMG_1768

For some reason, my post on my issues with the sacroiliac joint has been getting a ton of views recently.

I’m not sure what happened– whether Google decided to rank my blog more prominently in its search results, or if more people are aware of the sacroiliac joint in general, and looking to find answers.  (Hopefully both!).

But a lot has changed for me since I wrote that post, and to be honest I cringe a little bit when I see someone’s read it.  I wrote it from a place of doubt, when I was feeling really lost and wasn’t even sure I had identified the correct problem.

I’ve learned a lot since then.  I no longer doubt myself, or doubt that I have issues with this joint.  In fact, I’m starting to realize that sacroiliac joint dysfunction is actually way more common than it had seemed.  It also seems to be a pretty common experience for people with this issue to have trouble finding treatment, and to feel misunderstood.

With all that in mind, I wanted to provide a little bit of the perspective I have now, because luckily, I am no longer coming from that place of doubt.
***

First, a little background info:

I developed my sacroiliac joint problems in the fall of 2011.  I would be walking along, until all of a sudden one of my legs would get “stuck.”  I wouldn’t be able to lift that leg more than an inch or two off the ground.

The first time it happened, I went and saw a chiropractor who explained that it was caused by my sacroiliac joint getting “jammed.”  He adjusted that joint, and like magic the problem was gone: I could lift my leg and walk normally again.

But the same thing happened again and again.  I would go to the chiropractor, and feel better, but inevitably my leg would get “stuck” again the next day.  And nothing I could do would fix the problem, or allow me to lift that leg more than a few inches off the ground.  So back to the chiropractor I would hobble again.

It was confusing, and infuriating.  I’d never heard of anything like this happening to anyone before.  No one I talked to about it had ever heard of anything like it before, either.

And me, with my long history of chronic pain and unexplained physical symptoms that often just turned out to be my nervous system freaking out and being overprotective… it was hard not to wonder if this was just more of the same.

After all, this situation had a lot of parallels to problems I’d had in the past.  The times I was convinced I had injured part of my body, only to finally realize months later the pain was caused by my nervous system freaking out over nothing.  Was my SI joint really becoming stuck?  Or was my nervous system just “amplifying” the pain, and making a small problem feel worse than it was?

It didn’t help that none of the physical therapists I saw really seemed to know what I was talking about.  I would tell them about my leg getting stuck, and they would give me blank stares. “I didn’t learn about that in school,” they would say.  “The sacroiliac joint doesn’t really move.”

Doctors were not really much help either.  I saw two physiatrists and one orthopedist.  The physiatrists didn’t tell me that I didn’t have a problem– they just said it was out of the scope of their practice.

The orthopedist talked about doing some cortisone injections, but he didn’t seem to have any idea what I was talking about when I talked about my hip “locking.”  I passed on the injections, since it didn’t seem to make sense to receive a treatment from someone who didn’t seem to understand the problem.

So I just kept going to the chiropractor and getting adjustments, but ultimately, these adjustments were no more than a temporary fix.

A big part of the problem was that none of the chiropractors I saw seemed to be very interested in actually talking to me about what the problem was.  They all seemed to think that the long-term treatment was someone else’s problem– that I could just walk into any physical therapy clinic, do whatever exercises they gave me, and everything would work out.

There was nothing I could say, it seemed, that would make them understand.  How was I supposed to get a physical therapist to give me exercises for the sacroiliac joint, when none of the PT’s I saw even thought that could be my problem?

*****************************

A lesson I’ve been forced to learn, over and over again, in different contexts, is this:

Don’t stop.  Keep looking.  Things aren’t always what they seem.

This has happened to me at so many different points in my life, where I felt stuck, miserable, and afraid my life would never get better.

It happened in high school, when I was caught in a vicious cycle of depression and an eating disorder.  It happened in my early 20’s, when I lived with unexplained pain throughout my entire body for five years.  And it was the same, with this problem:

Don’t stop.  Keep going.  You never know when things could change.  The answer could be just around the corner.

*****************************

Every few months, I’d scour the Internet for anything I could find on the “sacroiliac joint.”  In 2011, there really were very few results (at least, very few that I could understand).  I think the first time I looked, the results were so pathetic and sparse that it was another six months before I looked again.

But as time went on, I started to find more and more resources.

Part of it, I think, is that maybe people are starting to become more of the sacroiliac joint.  And as awareness builds, more of that knowledge is finding its way onto the Internet.

Another part of it is that over time, my searching became more effective.  After all, at the same time all this was going on, I was also taking my prerequisites for physical therapy school, and beginning to understand more and more of those anatomical terms that had once been gibberish to me.

***
Two years into my problem, I stumbled across the website for a physical therapy practice near me.  One of the physical therapists actually listed the sacroiliac joint as one of her interests, so of course I made an appointment immediately.

That was the point at which things began to change for me.  Finally, I found someone who was willing to talk to me about what the problem was, and was able to think flexibly enough to give me exercises that would help me, but not make me worse.

She also taught me a way to use a foam roller to give my SI joints a self-adjustment.  It obviously wasn’t quite as good as going to a chiropractor, but it gave me the freedom to “unlock” my legs by myself, which obviously changed everything for me.  I no longer had to count down the minutes between chiropractor visits; no longer had to live in fear of my hips locking up on a Friday night and having to wait all weekend for an adjustment to free them up again.

This is getting long, so it will be continued in Part 2!

Chronic Pain, Fibromyalgia

How a physical therapist helped me through my lowest point, Part One

beautiful sky

This post is the first in a series of posts about my life-changing experience of pain neurophysiology education.  To see a list of all of the posts, click here!

Part One: Hitting Rock Bottom.

A few years ago, I was at one of my lowest points. A few things happened in my life, all within a short time period, that caused my pain levels to flare up. I had been attacked by a client at the group home where I worked. In the attack, I was thrown against a wall, which, of course, was not great for my neck and back pain. The week before, I had sprained my ankle and was having trouble walking. I was also beginning to experience the beginnings of chondromalacia patella in my right knee.

It was a horrible time in my life. I was going from doctor to doctor, begging for someone to help me, to give me a diagnosis. I couldn’t understand why I was in so much pain; it was like it had taken over my whole body. I was afraid there was something wrong with me, deep down, at a cellular level. I started reading about something called fibromyalgia online, and was frightened by what I read. I realize now that I what I was reading was out-of-date information, but at the time I became very frightened that something in my body’s chemistry was off, causing problems with inflammation.

The absolute worst moment was when I went to see a pain specialist at a highly-regarded hospital near me.

This guy looked great online. He actually listed fibromyalgia amongst his clinical interests. He wasn’t just a random doctor; he was the head of the anesthesiology department. He also had a law degree, which I figured meant he was really smart.

But he was no help at all. Most of the appointment was conducted by a resident (medical student in training). Because he could see many of my records from other physicians electronically, he didn’t seem to think he needed to do an examination of his own. Not once did he walk across the room and look at my back.

I tried my best to express how bad things were. I explained the fears that had plagued me for months, that I was afraid I had fibromyalgia, or a problem with inflammation.  Despite the fact that he’d listed “fibromyalgia” within his clinical interests, he seemed to have no idea what I was talking about.  I also asked him if he could give me some medication for the pain. His eyes got wide, as he suddenly “remembered” that every new patient was supposed to receive a drug test.

I left that day with a lump in my throat and my pride wounded. Somehow, this whole appointment that I had been looking forward to for so long had boiled down to the doctor thinking I just wanted to get high.

*****

The only good thing to come out of that appointment was that the doctor referred me to physical therapy at another hospital in the area. Without going into any detail, he said that a lot of his patients had had “luck” there.

I had actually been to physical therapy at the same hospital a few years earlier, when I had first hurt my back.  I had really liked my physical therapist at the time, so I decided to go back.  As luck would have it, they scheduled me with the same guy.

I filled out my intake paperwork, following the instructions and putting an “X” on the little diagram where they ask you to mark the areas where you have pain. I must have put about twenty X’s on the paper.

When Tim saw this diagram, he paused for a moment. “Hold on a second,” he said. “I’ll be right back.”

When he came back into the room, he explained that he’d asked the secretaries to make a few changes to my referral. He explained that the number of X’s I’d placed on my paper was alarming, that it was a sign there was something more going on with me than just “back pain” or “knee pain.” Instead, there was an underlying factor, causing me to experience pain in so many parts of my body. It was, he said, my nervous system.

“You’re really going to have to trust me on this,” he said. “I know it’s confusing to hear at first, but when people get like this, it’s because their nervous systems are processing pain differently. There’s no way you have injuries in this many different parts of your body, when you haven’t been in a car accident and you’re so young. I am going to teach you about what’s going on. Once you begin to understand that all of this pain is coming from your nervous system, we can start to work with that. You’re going to have to give me the benefit of the doubt in the beginning, but we really can help people get better.”

Click to continue to Part Two.

Interesting Articles

Posts that blew me away

snow streaks

I spent much of this weekend huddled in my house, hiding from winter storm Nemo.  I have to be honest– it was kind of fun.  I secretly enjoyed the driving ban– in a weird way, it was nice to have about 24 hours where I had no choice but to stay home and relax.  Normally I push myself to get out on the weekends and prove to myself that I still have a social life, but this Friday night was different.  No one was doing anything; it was illegal to drive, and nothing was open.  So I took it as a chance to stay in and catch up on blogs I’ve been meaning to read.

I found some really great blogs/posts this weekend.  There are a few in particular that I find myself still thinking about, hours later.  Great writing transforms you; it takes your breath away and makes you forget where you actually are.  To the authors of these posts: thank you.  I really feel like I learned something.

Interestingly, all of the posts I am choosing to link to are part of a series of posts on each blog.  I didn’t want to link to all the posts in the series (thereby spamming their respective authors with a million pingbacks) so I am only linking to one post for each.  I’m sure you guys can figure out the rest :)

Here are the links, in no particular order:

Does Your Journey Seem Long: a series of posts by author Stina Morrison on her experiences with endometriosis.  Her story really resonated with me.  Click here for part one.

Fibro Feist: an ongoing series of posts by my blogging friend Sarah called “What I need you to know.”  I just read her most recent post and it completely blew me away.

While I Wait: A Journey of Recovery: a blog written by Ana Turck, a native Sarajevan who survived the Bosnian War.  I was incredibly moved by her series of posts “They Are Coming.”  By the end of Part 2 I was actually crying (another sign of good writing!)

I hope these stories resonate with you all as much as they did with me.  And again, thank you to the authors of these posts!  Your writing was truly thought-provoking.

Hope everyone had a great weekend (and that anyone else in Nemo’s path had as relaxing a time as I did!).

ruby storm 3The dog was on patrol, as you can see.

Uncategorized

Don’t miss my interview on Fibro Feist!

For anyone who doesn’t already know about Fibro Feist, it is one of my favorite blogs.

I was so flattered when Sarah, its creator, asked if she could interview me.  Of course I said yes.  Check it out!

For a little bit more of a peek into my life, here are my Saturday morning reading companions:

Photo01170922_1